Refusal of PM

I am new here. On December 26th of 2018 I was told I have to have a pacemaker implanted at the end of January 2019. I am 39 years old I have 3rd degree AV block and the doctor says I have the heart of an 80 year old man. Apparently it looks genetic related. I am seriously debating if I am going to refuse the p.m. or follow through with it. There are many reasons I do not want to do it including the doctor doesn't have great reviews nor does the hospital that I am supposed to have it done at. I have seen mixed reviews of the doctor some websites says got a 4.0 or better rating some sites got less than a 4.0 rating. The Hospital rating is roughly about 3.9 I would prefer a rating of at least 4.3 or better. Also I have a question if anybody knows how to put on CPAP full face mask alone without help and without using their left arm at all I have severe sleep apnea and cannot go a night without my CPAP? And one more question I have is while the leads are being placed inside my heart what would happen if my body jumps as it sometimes does for no reason?


9 Comments

Three answers:

by Theknotguy - 2019-01-06 13:23:53

1: I'd check into finding another hospital and another EP.  If you are in the USA you can always call your health insurance, ask for a case manager, and see if they can recommend a hospital and doctor with the rankings you requested.  

2: Full face mask?  Not sure.  I have the partial mask and leave the one side unconnected.  I'll put the mask on, adjust it to make sure it  fits securely, put on and tighten the strap on the other side.  Not sure why you're having problems.  Also is there a CPAP tech in the area? Once again, I'd check with your medical insurance and see if they can recommend someone.  We have the CPAP store in our area and can always stop in.  You can also request help from a CPAP tech.

3: You won't have to worry about the body jumping.  You let the doctor know you have that problem.  But they have some really good, legal, drugs that will take care of body movement.  Propofol for one - you know, the drug that killed Michael Jackson.  When you're on that stuff,  believe me, you won't move a muscle.  

Hope things go well for you and you get the help you need.  

refusal

by Tracey_E - 2019-01-06 13:37:21

Refusing it isn't the answer. Finding a well rated board certified electrophysiologist in an excellent hospital is. Many people travel for their surgery in order to have better care than they can get locally. Don't go by online reviews, they are not unbiased. Do you know anyone with a pacemaker? Do you have a general practitioner or other doctor that you trust you could ask for a recommendation? I found my current ep through the Adult Congenital Heart Association. I looked for the largest clinic that was a reasonable distance from me that had an adult congenital clinic, then I called and talked to them to feel them out. They have over 1000 congenital heart patients, so they have lots of others like me who have been and will continue to be paced for a long time. I adored my previous cardiologist but he wasn't an ep and he didn't have other patients like me.

Having it will not only keep you safe, but it will probably make you feel a lot better. It's not nearly as big a deal as we think it is. I expected a horrible surgery and recovery, no one ever told me I'd feel better after. It was a lot easier than I expected and I felt great, so mostly I'd built it up on my head. I also have congenital 3rd degree block, got my first pacer in 1994. No complications to speak of, I'm on my 5th pacer now and I feel great. 

You can still put on the cpap mask. Don't swing a golf club. Try to keep the arm lower than shoulder level. Other than that, use the arm normally so the shoulder doesn't freeze. A small gentle movement overhead while healing is not going to do any damage. Some doctors no longer even give those instructions. 

Reply

by PolarBear - 2019-01-06 13:51:49

The thing that really sucks is I live in Central Utah I am in a small town find the nearest halfway decent-sized City is 59 miles away

 I don't have a vehicle currently and I'm under doctor's orders do not drive anyway. The nearest heart doctors are almost 200 miles away the hospitals is that do heart surgery are about 200 miles away and luckily my girlfriend is currently living a little bit closer to these places and she's going to be coming to down here to pick me up and take me to her place so that I can have the surgery and when I have the surgery I plan on not coming back to this stupid town in the middle of nowhere Utah

EP

by PolarBear - 2019-01-06 14:17:37

I just googled my cardiologist apparently he is an EP. I do like him because he walked in the office the day I met him and laid down the law. He doesnt beat around the Bush he is very point blank. The only problem I see is with the reviews. If anyone is curious who my dr is his name is David Wang and he works at Revere Health in orem and provo Utah 

 

Salt Lake

by Tracey_E - 2019-01-06 15:52:58

Cardiac care at the U is excellent.  My parents live nearby there so I know a few people who go there for cardiac care but none have pacers. They have a large adult congenital clinic as well.  https://www.achaheart.org/your-heart/clinic-directory/clinic-listings/utah-adult-congenital-heart-disease-program/

I would not go by online reviews, in fact I've never looked up any of my own doctors. Happy healthy people don't write those reviews. Is there any one recurring complaint in the reviews? If he's board certified as an ep and you like him, then I would trust that and have a discussion with him about the hospital's safety rating. They don't hand out those board certifications like candy at Halloween, they have to earn them. Many doctors have privileges at more than one hospital so you may be able to travel a bit for a better hospital but stay with the doctor you like. Or go have a consult at the adult congenital clinic.  

Good info

by PolarBear - 2019-01-06 22:26:44

Tracey, you nailed it! It is the safety rating that is most concerning and after thinking it over I'm gonna trust this Dr. He should be calling me tomorrow with my Echo results and I have other questions for him tomorrow as well.  Thank ya

ep certifications

by islandgirl - 2019-01-07 10:51:03

I asked my EP about EPs in the Denver area for my cousin.  He said EPs should be members of the Heart Rhythm Assoc., as they would be familar with the ever-evolving field.  You can go to the Heart Rhythm Assoc website and search.  

I travel 75+ miles each way to see my EP and this is my 20th year!  He has sent me to Oklahoma 2x for a specialty ablation and also 150 miles from my house for another specialty ablation.  He had  made contact with EPs at Heart Rhythm conferences to discuss my case.  

Your heart health is important for your future.  Good luck!

stop looking at reviews

by dwelch - 2019-01-07 23:37:15

Stop looking at reviews, not worth the pixels they are printed with.  Ask the doc if you are his first pacer patient or not (I think we can assume we all know the answer).  Like Tracey_E I have had complete (third degree) block since birth, first pacer in 1987, am on number five.  Third degree block is not something to mess around with, but is easy for a pacer to fix.  

Have the doc show you on the EKG what is going on, what the block is doing to your heart and what the risks are now and if you go untreated.  (well over the phone cant do that but if/when you meet in person).

You are certainly free to refuse treatment, that is your choice.  Talk to the doc, can you have a conversation with him, does he understand your questions and provide answers that make sense.  From that do you trust the guy.  

DONT expect him to have other young patients like you, while pacers are not that uncommon the younguns are spread out, so if he has some that is a bonus.  But once into adulthood the placement of the device and management is the same.  

The EP may not be the one that does the surgeries, and that is fine, my first two docs did the surgeries and the other stuff, current doc does just the EP stuff management of the device year to year, and another person does the surgeries, plus others in the practice for non-pacemaker management type issues.

The surgery itself is no big deal, it takes between days to weeks to recover, some things days, some things weeks.  Eventually it is like a toe or belly button, you know its there, but you dont think about it or mess with it or worry about it...

 

AMA

by PolarBear - 2019-01-17 12:36:31

They put my PM in 2 weeks early. I spent the night in hospital the very next morning they said my leads were out of place in the xray so they operated again and kept me overnight again then today I left AMA before they even did the xray or any other tests and I will not follow up or anything they can kiss my arse

 

You know you're wired when...

You play MP3 files on your pacer.

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Try to concentrate on how you’re able to be active again and feel normal, rather than on having a machine stuck in your body.